Normal

Sorry for not posting sooner. We have been very busy enjoying life with an energetic six monther.

G has settled back into a normal routine. At first, he needed extra snuggles and attention to calm his frazzled nerves. Placing him on his back would result in a fit of hysterics. It seems that the poor kid was a little traumatized by his stay in the hospital. Recently, he is back to his old ways, but with a few improvements.

He laughs ALL the time. Everything is hilarious to this silly nut. Before his surgery, getting a giggle was hard work. Now, sometimes I can just smile at him and he will burst into laughter.

He gives a zillion kisses. He loved to give smooches out before, but has intensified his desire to plant sticky wet ones on unsuspecting victims... I mean lucky recipients.

He "blisses out." Now that breathing is not such hard work, he can actually relax. Watching him experience this sensation for the first time was strange and wonderful. He just lay in my arms, smiling up at me. He wasn't busy or especially interactive, but simply content.

We now have appointments with the nurse clinician every few weeks, and the GP as needed. The pediatrician popped in for a visit at our last appointment, too. We feel like VIP up in Peds. We saw the cardiologist a couple of weeks ago, and will see him again at the beginning of November. All of these appointments help us make sure that G is healing as he is supposed to.

So far he is gaining weight at the quickest rate in his life. His oxygen saturation is always in the high 90's,  sometimes even 100%. He has some leaking in his pulmonary valve,  which was expected given the aggressive patch that was used. His tricuspid valve, located between the right atrium and ventricle, is also a little leaky. It was well formed, and its decreased function is a casualty of the surgery. The cardiologist explained that it was "shoved out of the way" when the patch was placed over the hole between the ventricles, and now the leafs don't align perfectly.

We will be watching to make sure that the pulmonary arteries grow with G, and that the PFO (a hole between the atria, left by the surgeon to relieve right heart pressure ) closes on its own. If it doesn't, a surgeon will close it in five years or so by using a tool on a catheter threaded up a vein.

In the long term, we will be watching the pulmonary valve function. Over time, the leaf of the valve from the donor patch will deteriorate, decreasing valve competence. There is a decent chance that he will need the valve replaced in adulthood.

Less time is spent thinking about hearts these days. Most of our time is spent playing and napping. We have been ordered to live in a bit of a bubble for the next while to prevent illness while the baby recovers. Home is our sanctuary. We play (often ), clean (sometimes ), sing (poorly but proudly ) , and carry on with life as usual.

The baby is hugged often. We are so grateful for him. But as wonderful as gratitude is, I hope that this constant feeling of being thankful that he is breathing fades away. It's exhausting living this way. His death still fills my dreams almost every night. I long for the days when most of my thanks are given for trivial things: a meal from a friend, a favour from a neighbour, or a gift from my spouse. Some day, the line between life and death will not seem so immediately important, and we can get wrapped up in living.

As far as milestones go, G is doing very well at sitting on his own, and is trying to cut that first tooth. His gum has had a swollen lump for about 5 days now, but that pearly white is just waiting for the right time to show.

It seems that I will be ending this post here. It's late and my bed is calling. I will try to keep up this blog, but my son seems to keep me pretty busy. Posts will likely be intermittent.

Love.

A quick update

We are all home now, safe and sound. I will write more when I have some time. We are happy, healthy, and ready for sleep! Good night.

An apology to a few doctors

Within a few days of G's diagnosis, I posted about my frustration with the delay to see a specialist. I was coming to terms with reality. My baby had a life threatening disease. Specifically, I wondered how so many professionals had missed the signs. I should cut them a little slack.

When the surgeon first met G, he said that the baby was too healthy to have Tet. We now know that two additional defects, PDA and PFO, rerouted more blood to the lungs. He did not appear sick. If the surgeon - one of two people who see all Tet babies in the province - says he seemed too healthy, I guess the signs weren't so obvious. 

The blueness around his lips did not go away, even when his oxygen saturation was 100%. I guess that is just his colouring. When the docs "missed" his cyanosis, there was no cyanosis to miss.

I will be letting the doctors know about G's special circumstances. For now, I am just so happy that his heart was successfully repaired. Life is good! 

Discharged

G was discharged yesterday afternoon! Yahoo!

We are staying in Vancouver until his follow up appointment on Friday. Then , pending some test results, we will be coming home to the Island!

As soon as we strapped the baby into the stroller yesterday, he was smiling ear to ear. He usually isn't a huge fan of it, but I think he understood that we were leaving the hospital.

We are so thankful for the excellent care he received during our stay. While he was in the ICU, a team of intensivists and the cardiology department saw him for rounds twice per day. They made all decisions together. We didn't need to ask about a second opinion; there were always a dozen opinions! We had daily consults from general surgery from the day he had bowel problems until the day we left the hospital. We had an ICU nurse taking care of G one-on-one. On the ward, he was checked every hour. The staff understands that medicine and tests can be important, but so is comfort and sleep and nutrition. They always weighed decisions and used their better judgement. I am so impressed by the competence and compassion of the hospital staff.

Now we have a couple of free days here in Vancouver. We are going to focus on relaxing and having fun !

Children's Hospital day 7 - Finally out of the ICU

I wrote this yesterday, but forgot to post it. So imagine that you are reading it on Monday.

On Saturday, G was sent to ICU isolation because of a suspected cold. The virus panel came back negative, but we got about 24 hours in a nice private room.

Yesterday,  we were discharged from the ICU and sent up to the cardiac ward. They were waiting for normal kidney function and a couple of bloodless bowel movements. General surgery said that I could breastfeed. Originally, we thought G would be bottle fed, but the surgeon said we could feed ad lib. G was back to himself within a few hours of getting back on the breast. He is smiling and playing, and even gave me a kiss this morning.

The ward is much quieter than the ICU. We have a large private room, and there is a bed for me to sleep on. One nurse covers several patients, so a lot of the care is left up to us. It suits us quite well. The baby is a happy camper, although he has reverted to old habits like comfort nursing.

He isn't hooked up to much any more. He dislodged his central line (which was stitched in place),  so it was removed. While it was being taken out, he kicked so much that his foot IV became unusable, so it was removed as well. He just has one IV site on his hand, three telemetry wires on his chest to measure breathing and heart rhythm, and an oxygen saturation probe on his toe.

Pro tip: if your baby ever needs blood tests or similar procedures done, leave it to the pros. It is tempting to try to comfort the baby during the test. This is a mistake. G started seeing us as the bad guys who were hurting him. It was better for us to leave the room and rush in as soon as the test was finished to comfort him. Hearing him screaming in pain was terrible, but seeing him reject me was worse. We are back to normal now, but he wasn't too happy with mom and dad for a while.

Children's Hospital day 5

Yeaterday was an interesting day. G's kidney function went back to normal, which we are really happy about. His recovery, sparing his gut complication, is going quite well. He had a bunch of tubes and wires removed, and now only has two iv sites, an oxygen sat probe, and a central line in.

The only reason we are still in ICU is the gut complication. He had another bloody diaper two nights ago, and one more yesterday afternoon. The blood is getting darker (so not fresh) and the volume smaller, but there is still quite a bit of it. It gives him the smelliest farts.

He was given a diuretic which ended up driving his potassium too low, so his heart rhythm got a little wonky. Once his potassium got topped up, he was fine.

The biggest issue is that he can't eat anything by mouth until his poop is normal. He is so hangry. He only wanted mom and dad last night, so I spent the night in icu with him. The intensivist on last night was eager to see if we could settle him with creature comforts instead of drugs, which I was thankful for.

Today he had a normal poop (Yay! ) but poor urine output  (boo! ) They want to check his creatinine levels again, but his central line won't give up any blood. I am not sure what they will try as they are avoiding poking him again.

We got the ok from general surgery to give a little tylenol and Pedia sure by mouth. He had 10 ml of the pediasure and loved it! If he tolerates it, he can have 15 ml in a few hours. We are going slow to go easy on the gut.

His next bed neighbour got to go upstairs today after two very tense weeks in icu. We are so happy for them!

That's all for now. I am heading back in to see him.

Quick day 4 morning update

Creatinine is way down!!!! That means his kidneys are much better. He is more himself this morning. They plan to remove some of the tubes in his body today. Life is good.

Children's Hospital day 2 + 3

Today was surgery day. We reported to surgical daycare at 7 am. We dressed G in a hospital gown and got to snuggle him until about 8:30 while various doctors and nurses came to see us. Even though he was fasting, he was still a happy boy. The nurses were stopping on their way by to smile and talk to him. He was given a sedative to keep him calm when he was taken to the operating room. It's a funny experience to see your baby get stoned. He was really chatty!

We decided to go out and have breakfast with our parents to distract ourselves. We were given a pager that would go off when the surgery was done. We met with the surgeon post op in the mid afternoon. I love this man. He is so kind and brilliant.

G had a transannular repair, which means that part of his pulmonary valve and artery are from a donor. His coronary arteries were in the right place, and he hadn't grown any new blood vessels which could complicate surgery. He did have patent ductus arteriosis and patent foramen ovale, two other defects. These are a duct and a hole that are present in the fetus but normally close after birth. His did not, which allowed extra blood to reach his lungs. But his pulmonary valve was extremely tiny. So his really bad heart was compensated by two other defects. We have been saying that he had a problem so he MacGyvered himself a working-ish heart.

We were able to see him a while later. He had lots of tubes and wires : oxygen prongs in his nose, two chest tubes to drain fluid around his heart, pacing wires which could be hooked up to an external pace maker if needed, a central line in his neck, an arterial line in his wrist to monitor blood pressure and take blood for tests, and an IV. He was on a sedative and morphine, so he was really groggy, but he was doing really well.

We stayed with him until about 10 pm. At that time they were talking about moving him to the ward the next morning. We decided to go home to get some sleep.

The hospital called around 12:30 to inform us that G had taken a big poop of mostly blood. They had taken him for an abdominal x-ray, which came back clear. His abdomen was soft (good) and not swollen  (good). They said they would call us if anything happened - a diagnosis or another episode. We  didn't hear from them, and went back about 7am.

G's creatinine is elevated, which means that there is some sort of injury to his kidney. Bypass during surgery is very hard on kidneys, plus G had a CT with kidmey-toxic  dye just before his surgery, plus they kept him a little dehydrated (which is hard on kidneys) post op to help his heart and lungs. It continued to climb yesterday and we are waiting for it to start to decrease.

So he has complications with his kidneys and intestines. A general surgeon came by and examined him. He is being fed through an IV to give his gut a chance to rest for a few days. He will be put on more antibiotics if needed. His fluids have been increased and he is off all of his pain meds. He was still groggy for most of yesterday, but around 9 pm we saw some of our baby emerge from the sleepy zombie. He babbled and even played a little. That recharged us after a day of complications.

Oh and I got to hold him yesterday! It was heavenly.

Heading back to hospital now. We will be in ICU for a few more days, maybe on the cardiac ward by Saturday if all goes well.

Children's Hospital day 1

Today was pre-admission day. We spent most of the day at the hospital. G had an ECHO, ECG, blood work, a chest X-ray, and a physical exam. We also had a chance to meet the surgeon.

G was very well behaved for his ECHO. He was not allowed to sit on my lap, but he kept his cool. We needed two short breaks, but overall a good experience. He also did very well during his ECG.

The blood work was a different story. His vein collapsed twice. We had to hold him down really tight and he screamed the entire time. At one point, his fingers started going blue, and his vein wasn't giving blood anyway, so I stopped the test and snuggled my baby. The third time was the charm, and we got it done. Afterward, dad and I had some much needed chocolate  (dropped off by another awesome heart family ) and G had a cuddle and a snooze.

The chest X-ray was better. G was strapped to a board. He protested a wee bit, but it was all over pretty quickly.

Next we met with the surgeon. He introduced himself to the baby first and had a little cuddle. This guy is awesome! He then informed us about the surgery. He was really thorough. There are two big concerns with our case.

G is bigger and healthier than he should be. This may indicate that his body has grown more blood vessels to improve circulation to his lungs. These hypothetical vessels would make it difficult to put G on bypass during the surgery, and may lead to lung congestion afterwards. I am hopeful that he is so healthy because I was so diligent in feeding him often and that we don't need to worry about these vessels.

Issue number two: the coronary arteries could not be located on the ECHO. Since a nick in a CA would be fatal, the surgeon needs to know where they are. Once G is put under anesthesia tomorrow, he will have another ECHO. If that fails, he will have an MRI. The location of the CAs will determine the surgical approach. He doesn't know how much of the pulmonary valve he will be able to preserve. If he protects the whole thing, G has a better chance of never needing reoperation. If he slices through it, G is less likely to need reoperation in childhood than option 1, but very likely to need it adulthood. If the CA are in a really bad spot, G will have a conduit placed to increase blood flow to the lungs and will need several operations to replace it as he grows. We are hoping for anything but option 3.

We report at 7 am tomorrow for surgery. G will not be able to nurse after 4am but can have a sugar water solution until 6 am. The operation will last 4 to 6 hours.

For now, we will be cuddling and playing and enjoying this time together.